Spread the Word to End the Word: It All Starts With Us

It’s nice to know that after over 27 years of marriage, my husband still has the power to surprise me.

Ned is in many ways my complete opposite, a math guy, science type, non-talker. Refers to himself as a nerd. I, on the other hand, inhabit entirely the right side of my brain.

I talk enough for the two of us — and probably for our three sons as well. I have to admit that I have often felt like talking things out is simply not a guy thing.

Don’t get me wrong; Ned is as quietly passionate about our life and sons as I am noisy and exuberant. Our family system works very well. Ned and I often “divide and conquer,” for instance, when it comes to raising our sons.

Our oldest son Nat has autism and some pretty challenging intellectual disabilities, and he is the one who taught us first how to be parents. But of course, we have evolved some pretty different roles when it comes to the boys, and especially Nat.

I do most of the “talking” parental tasks: dealing with schools, doctors, therapists; going to the support groups; pulling together a group of families to create Nat’s current group home. Ned, on the other hand, does the “action” tasks.

He is the one who takes Nat out on walks in the community, and showed him how to cross at the light. He’s the one who drove him to his first day of school, and just waited outside the classroom half the morning to be sure everything was okay. And Ned is the one who has taken Nat to countless Special Olympics practices, waded with him in cold swimming pools and threw basketballs to him in cavernous gyms.

He is there for his sons as much as I am. He just lets me do all the talking and emoting.

So the other day when Ned seemed visibly upset about something, I snapped to attention. He told me he’d just gotten into an argument online with a guy in his favorite computer nerd chat room. “About the word ‘retarded,'” Ned said. Somebody had described some technical thing that way. He’d pushed back, to no avail.

He flipped open his laptop and showed me the actual transcript of the conversation in this chat room, with someone whom I’ll call “Other Guy.” I have edited it for clarity:

Other Guy: What’s wrong with the word retarded?Ned: I don’t appreciate it being used as humor. I don’t find disability funny.Other Guy: My bro has down syndrome, if I’m not offended by a WORD then why are you guys?Ned: How does your bro feel in the school cafeteria when a bunch of kids calls someone retarded, and laughs?Other Guy: Have you ever met someone with down syndrome? they’re the coolest mofos ever, i really don’t think he’d care.Ned: I was in the pool today with my son and the rest of the local Special Olympics swimming team. I don’t mean to get into a competition with you about disability cred. It looks like we just disagree about this word…I know, the word has become a habit, and people use it without thinking…We should just drop this. I don’t think we’ll see eye-to-eye.

Ned looked so frustrated, really disappointed. I came over and gave him a hug. “I’m really so proud of you for speaking up, though,” I said.

I knew how he felt; I call people on it from time-to-time and there is always that sweaty moment I have when it seems like the other person is going to laugh at me or worse.

But the next morning, Ned came over to me with his laptop open and said in that matter-of-fact tone of his: “Want to see something good?”

“Sure!” I said. I peered at his screen, and there I saw this continuation of the other day’s r-word conversation:

Other Guy: Hey, sorry about the other dayNed: What happened the other day? (I talk to a lot of people here)Other Guy: We were arguing about wordsNed: Oh, “retard”?Other Guy: Yes. I can see where you’re coming fromNed: You have the brother?Other Guy: yupNed: I really do think no one means anything by it, but once they start thinking about it, they feel differently. Thanks for checking in. Is your brother into sports? If so, special olympics really can be greatOther Guy: He likes swimming and dancingNed: Sounds like my son! You made me happy, thanks.Other Guy: I dunno how, but you’re welcome!

I could go on and on about how we all should do this, how we can change the world, one person at a time, and how we gotta stand up for what’s right… but take it from someone in love with a computer nerd: sometimes just a few words are really all that’s needed.

Did you know that by casually using the word “retarded” to refer to an action as less than ideal you are making someone with an intellectual disability feel less than human – whether you mean to or not?

This cause means a lot to me, I hope you can all take one minute to be a fan of respect and take the R-word pledge at http://www.r-word.org.

About the Author

Susan Senator is a writer, speaker, political activist, wife, and the mother of three boys, the oldest of whom is 22 and is severely autistic. Susan likes to say: “With autism, never say ‘never.’” She is the author of Making Peace Wth Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts, (Trumpeter, 2005), and The Autism Mom’s Survival Guide (For Dads, Too!): Creating a Balanced and Happy Life While Raising a Child with Autism (Trumpeter, 2010) Her current novel is Dirt: A story about gardening, mothering, and other messy business (Stellated, 2011).